Overview & update (Nov '09) of Scottish project to enable access to information about local resources (help, classes, social networks, aids, etc., etc.) for people with 'Long-Term Conditions' (health) who want to manage these themselves

Note the ‘bulge’ moving through the age profile of the overall population starting in 1951, resulting in the ‘supertanker’ appearance projected forward to 2031. This relative preponderance of older people vis-à-vis those of working age will not necessarily last for ever, but will have significant societal effects for 20-30 years or more. The challenges that this changing age profile will be likely to represent, amongst other demographic aspects of the prevelance of long-term conditions and associated problems, is discussed briefly in the Long Term Conditions Action Plan (see http://www.sehd.scot.nhs.uk/mels/CEL2009_23.pdf ) which text is replicated also in the ALISS Project blog at http://ltcsignposts.wordpress.com/about-this-project/the-demographic-backcloth/ This slide and the next are borrowed from a presentation given to hi-heid-yins in the NHS and Local Authorities in May 2009. And the material has been shared in a variety of planning and policy contexts since.

We set up a mock-clinical encounter between our Project Manager (a Practice Nurse in real life) and our researcher, who was then sent off out into his local community to see what he could kind, to help him live well with his circumstances. Besides being ‘recently diagnosed’ with rheumatoid arthritis, the researcher was also told that he needed to loose some weight, and be aware that he would be likely to ‘feel rather low about all this’ (we did not want to go any further towards identifiable mental health problems). In practice the response from community information-intermediaries was markedly different when approached about ‘feeling low’. Almost everyone immediately signposted our researcher direct to health resources. Whereas for rheumatoid arthritis, the range of potentially relevant resources seemed much easier for them to discuss, and to advise upon. Our researcher blogged about his search on ‘Being patient’ (see links). It should be noted that this ‘ethnography’ in no way attempted to appreciate the broader physical, mental and emotional implications of undertaking such a search while actually having a combination of LTCs – what we were after at this earlier stage was some understanding of the information considerations. Interestingly though, when our researcher did himself fall ill over the summer, he did indeed experience some of the broader implications of trying to find out about his condition while distinctly ‘under par’ and exhausted.

It seemed plain that our institutions were doing as best they could, on the basis of the tried and tested institutional model, where a database is set up somewhere centrally and is thereafter maintained by reminding those with entries in it that their information has fallen due for renewal. But there doesn’t seem much of a link between that administrative process, and the actual various aspects of the business of service provision. As a result, the searcher is left with a lot of legwork to do, which needs a good deal of persistence. Which you may not have, if you are feeling unwell and ‘low’ about your circumstances generally.

What it says on the tin (title) especially the ‘subject to continual improvement aspect.

Transcript of "ALISS update & overview (Access to Local Information to Support Self-management) Elevator Pitch v4"

1.
A ccess to l ocal i nformation to s upport s elf Management [‘Living Well with a Long-Term Condition: Finding Local Supports’] An Elevator Pitch… Nov ‘09

3.
The original Brief: ‘ Better Health Better Care’ Action Plan <ul><li>“ A self management framework is required in each area to identify existing support systems and provide a map for staff and the public. </li></ul><ul><li>It will include </li></ul><ul><ul><li>details of the different kinds of support available </li></ul></ul><ul><ul><ul><li>in a particular area, </li></ul></ul></ul><ul><ul><ul><li>or for a particular condition at each stage of the patient journey, </li></ul></ul></ul><ul><ul><li>details on group activities, condition specific and generic self management programmes, mental health services, motivational coaching; carer and family support and telecare support .” </li></ul></ul>

4.
We needed to start somewhere: a scenario <ul><li>You’ve been diagnosed with a Long-Term Condition…(e.g. rheumatoid arthritis) </li></ul><ul><ul><li>Got the pamphlet about the disease and how worried to be about it </li></ul></ul><ul><li>You’re minded to try ‘self-management’ of the condition </li></ul><ul><ul><li>Got the general advice about living with it </li></ul></ul><ul><ul><ul><li>Which suggests you need to go & find out some stuff…. </li></ul></ul></ul><ul><li>What help d’you commonly find? </li></ul>

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How about this? <ul><li>Yes, maybe a start, but what if I want local info?? </li></ul>

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Or these? Useful as far as they go, but they do rather tend to stick with static info like service HQ, or buildings.

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<ul><li>… Which can generally be found in places like this </li></ul>

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Our take on all this: <ul><li>&quot; When I see things available to me locally, I need to know if I can do it on a Thursday afternoon , which is the only time my caring responsibilities allow. And I need to know if I can get a bus there - I don't have a car” </li></ul><ul><ul><li>So the general phone number for the Centre, or worse the organisation’s HQ, doesn’t really help enough? </li></ul></ul><ul><ul><li>If institutions could really help, they would be doing it already, surely?? </li></ul></ul><ul><ul><li>… There seems to be a problem. </li></ul></ul><ul><ul><li>Time for a different approach?? </li></ul></ul>

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We think… <ul><li>…that this sort of specific, fluid, information is what we want to help develop. </li></ul><ul><li>That it can best be: </li></ul><ul><ul><li>Gathered </li></ul></ul><ul><ul><li>Sorted & made sense of </li></ul></ul><ul><ul><li>And made available where you are… </li></ul></ul><ul><li>… . Socially! </li></ul>

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Our Approach 1/4 What might people find useful? <ul><li>Early rehearsals </li></ul><ul><ul><li>‘ Being patient’ – ethnography in south Edinburgh </li></ul></ul><ul><li>Health Literacy work </li></ul><ul><ul><li>Two groups of adult learners with a range of LTCs </li></ul></ul><ul><ul><li>Constructing their own experiences within a Learning process </li></ul></ul><ul><ul><li>Tutor pack, videos, etc. for use elsewhere, to come </li></ul></ul>

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Our Approach 3/4 Involving schools and students <ul><li>Thus far we’re approaching: </li></ul><ul><ul><li>‘ Curriculum for Excellence ’ frameworks </li></ul></ul><ul><ul><ul><li>health & well-being, social science, technology, etc. </li></ul></ul></ul><ul><ul><li>Learning exercises to support CfE ‘experiences and outcomes’ within each framework </li></ul></ul><ul><ul><ul><li>for school students </li></ul></ul></ul><ul><ul><ul><ul><li>E.g. Search & find, sense-making, upload to web, garnering patient experiences, crisp telephone manner when speaking to service-providers, class projects on web-application development, etc etc. </li></ul></ul></ul></ul><ul><ul><li>Intending to work with </li></ul></ul><ul><ul><ul><li>local secondary school and feeder primaries </li></ul></ul></ul><ul><ul><ul><li>Teacher networks </li></ul></ul></ul><ul><ul><ul><li>… to create a series of ‘ exemplars ’ with which to inspire other teachers, hopefully </li></ul></ul></ul>

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Our Approach 4/4 An open innovation process <ul><li>Models include: </li></ul><ul><li>Social Innovation camp </li></ul><ul><li>‘ user-centred design’ </li></ul><ul><li>Open Ventures Challenge </li></ul><ul><li>We’re planning to meld these: </li></ul><ul><li>Recruit via </li></ul><ul><ul><li>LTC Alliance member organisations </li></ul></ul><ul><ul><li>‘ Geeks with Heart’ networks </li></ul></ul><ul><li>Run a series of warm-up workshops for both communities </li></ul><ul><li>Run a camp – but phase the event so that people with LTCs can make a real contribution at the time </li></ul><ul><li>Broker support from wider ICT and Change communities for the range of prototype applications and business plans that we hope will result </li></ul>

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contact <ul><li>“ The Access to Local Information to Support Self Management ( ALISS) project is using new and emergent mobile technologies to empower people with long term conditions to support each other by easily accessing, co-creating and sharing information .” </li></ul><ul><li>christine.hoy-at-scotland-dot-gsi-dot-gov-dot-uk </li></ul>